Alright, alright, I get it life, unexpectedly parenting a sick child knocks the wind, startles the soul, evolves the identity but you know what? I’m tired of the anticipatory grief and bored by the ambiguous loss of parenting this way in the world.
The roller coaster peaks and valley’s of illness and health aren’t startling anymore. The intrusive thoughts of my child dying aren’t phasing me they way they once did. I’ve habituated to your melancholy and acclimatized to your extreme bouts of emotional weathering.
Pediatric rare disease is a perfect monster.
The pain of a sick child is a smoky, chocking shadow in my everyday mundane — I learned this early on. What I didn’t anticipate and what has struck me as even more gruesome and horrifying is the realization that this monster has burrowed itself deep inside. It’s intermingled with my DNA and taken squatting rights in my brain. A perfect monster pretends to be benign, nothing to be feared, more an irritant than anything really … and then you live with it for a few years and the monster becomes familiar, even comforting .. an ever present part of the family, at every function, gathering and holiday.
A perfect monster becomes your best friend, she’s disarming and easy to take to dinner. She knows all your worst fears and pain, she says all the right things until you realize, she has become you.
“Whoever fights monsters should see to it that in the process he does not become a monster. And if you gaze long enough into an abyss, the abyss will gaze back into you.”
― Friedrich Nietzsche
My most recent lesson in parenting a sick child: do not get comfortable with the disease, the illness. Do not habituate, acclimatize or normalize the patterning of disease medically, psychologically or socially. Let the disease maintain as foe, not friend. Let it be alien, unnatural, painful, retching even.
After-all, in order to claw it’s eyes out, you’ll need to see it face to face rather than in the reflection of a mirror.